Update on Buddy's difficult child

Discussion in 'General Parenting' started by buddy, Oct 27, 2011.

  1. buddy

    buddy New Member

    Well, today they upped the lithium (300 in morn, 300 in evening) they are not seeing any side effects, or any effects but it is early.

    Yesterday night he was ok when I visited, I gave him a list of things to try to work for (halloween, horseback riding, etc.) and he read it intently. sure enough, they said he is really trying hard today...(that was about 11 a.m.) so i waited for their call and they said he has been able to follow enough redirection to say he can go and since he had no aggression to me last night they were fine. Dr said I could keep him out as long as I wanted. We went therapeutic horseback riding and he was a rock star! I offered him dinner and he wanted it but he had his night planned (my routine freak boy) and they have movies most nights on the older kid side...he likes to join them. If he can keep control of his blurting out they let him go over there,. It was strange to me that he wanted to go back but he knew he had to so he is keeping himself calm the way he knows how. I just wanted more for me, but of course I just did what he needed. At Culvers he actually stood by me and put his head on my shoulder. I wanted to grab him and do the embarassing mom hug/kiss thing but I restrained mysel.

    They are letting him try to earn halloween as a pass. His teacher said if she is free she will let him go trick or treating on horseback! (I will be the one behind with the poop pail, sigh) He doesn't know in case it falls thru but it would be so great.

    therpeutic HB teacher said it was the best he has been in two weeks. Makes sense. they said last time he was blurting and swearing consantly...(that was day after first outburst when we called 911 but he calmed and I had him stay home) Nice thing was he was smilling and super relaxed on the horse. Those horsies do wonders for him.

    we have another pass for sunday so he can go again. Here's hoping. Still missing being his mom. I am going to turn off this computer by 11 and force myself to sleep though! Thanks guys.
     
  2. TeDo

    TeDo Guest

    Glad it went so well. Give him a BIG virtual hug from his favorite board auntie. Breathe and relax tonight!!
     
  3. InsaneCdn

    InsaneCdn Well-Known Member

    Buddy...
    You still ARE his mom.

    What you are not, right now, is his 24/7 caregiver.

    The day may come when you are no longer his 24/7 caregiver. But you will not stop being his MOM. You are the "family" that provides what the others cannot... and you will continue to do that to whatever extent it is possible.

    Get a good night's sleep, MOM.
     
  4. keista

    keista New Member

    So glad to hear this wonderful news. Still pretzeling here that it continues to go well.
     
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm so glad he had such a good time on his pass and is doing better! As Insanecd said you are always still his mom! Use this time to recharge as much as possible. As much as my difficult child hated going into the psychiatric hospital he always liked it once there. I think, because the can be so structured, he did well.
     
  6. Hound dog

    Hound dog Nana's are Beautiful

    A good update. :)

    I do have a question though, is the swearing at you deliberate or a possible tic? (which can also look deliberate) I dunno how much an issue verbal or non verbal tics are with your difficult child so was just wondering.

    I hope he continues to do better. And yeah, you're still the MOM by the way. We don't ever get to retire, just so ya know. lol

    ((hugs))
     
  7. crazymama30

    crazymama30 Active Member

    You are his mom, you are his mon who had had to make a difficult choice to help her son. I hope when I am in a similar situation, I do as well.
     
  8. buddy

    buddy New Member

    Very good question. I will ask about this. I have wondered in the past but it didn't pop into my head this time. I will ask doctor to have them watch to see what they think. I said it is like a tag at the end of every question, or as he is getting out of a car. Yesterday so weird, he started opening and closing the door over and over, and later flicking the handle on the car. It looks like he is just trying to get my attention (negative) but I ignore it and it just goes on and on until we transition to the next step. he has a phrase he sings over and over. He knows it drives me crazy sometimes so I think it reinforces it but it doesn't start it...just makes it go on longer if I say anything. Hard to tell the difference between ticks and obsessive/compulsive/perseverations. Anyone know a way to tell?
     
  9. buddy

    buddy New Member

    This is the agenda that just got sent to me for our "core team" meeting (not the IEP meetings we also hold, this is to specifically adress the bip and process--no changes to IEP ever, just methods/materials/training etc) We meet every 3 weeks....teacher, psychiatric, admin for sp ed, my Traumatic Brain Injury (TBI) home psychologist always comes and advocates really well, me, sp. ed teacher/case manager, Speech Language Pathologist (SLP), Occupational Therapist (OT), DAPE teachers...and that is not the whole team that meets for the IEP! Really, if not for the admin, this is an awesome team. So after I sent an email and phoned the behavior team here is the agenda. You have read my posts, anything you would add??? I dont want to give away too much about hospital. right now...

    (I'm gonna cross post this under sp. ed in case anyone has any ideas there....)





     
    Lasted edited by : Oct 28, 2011
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I really am thinking some of his outbursts are tic related. They seem so uncontrolled even though it may seem deliberate because of the words. Thats the problem with tics that are cuss words.

    Also, why lithium. Are they thinking bipolar now? As far as I know the only thing lithium treats is bipolar. Well, I am wrong. It can be used for cluster headaches and hypnotic headaches and also for neurodegenerative disease amyotrophic lateral sclerosis. I didnt know that! Learn something new every day.

    However, I will tell you because of our experience with lithium to make sure you dont change his salt intake up or down now that he is on it. Lithium is a salt so dont stop him from using salt or make him use more salt. Also make sure he drinks lots of water because he can dehydrate easily on lithium. He will also have to get blood levels checked. Make sure they check his thyroid levels because it can cause him to go hypothyroid quite easily. It didnt take Cory 3 months on lithium before he needed to go on synthroid. We noticed it because he started to get a bit moody and his lithium levels were fine so I made them check his thyroid levels and they were low. They put him on synthroid and all was well in the world again. Actually, Cory was in Residential Treatment Center (RTC) and he noticed he was irritable and made them take his levels because he knew to ask to check his thyroid because we had discussed all this beforehand. They just called me to verify that he knew what he was talking about...lol.
     
  11. buddy

    buddy New Member

    Thanks janet, yes they actually even checked his thyroid now to make sure it was ok and also to have a base line. They also did full cardiac workup. No, they dont think he is bi polar. Certainly as with many things he has some shared symtoms but doesn't meet criteria at all. But they do use lithium for brain injury/impulsive aggression kinds of kids. They said it doesn't seem to work for the kids who are more planned aggression...does that make sense? Actually starting a couple of years ago his pediatrician (specializes in behavior kids) started mentioning it. Now the neuro/psychiatrist and the in pt. doctor all mentioned it too. Why they went there was first because it does show good success for kids like him, second since it is a salt, the body can directly use it...doesn't have to be metabolized thru the enzyme system which is a huge deal for him. He could still have no benefit or a reaction like anyone, but at least that issue is off the table. I will make sure to watch for and ask for all things to be checked instead of just upping or lowering dose based on what you said, thanks for sharing that.
     
  12. buddy

    buddy New Member

    yes, you guys have me thinking....PLUS they are typically the same kinds of words, in the exact same tone in similar situations each time. Same for the light aggression stuff (little bumps, fake punches, etc. ) It all looks just like little melodys he will sing out of the blue, the hand flaps he will do, sudden sounds like clearing throat, blowing his nose (no kleenex) pokes....etc. Not that ALL of what he does looks like this but probably 85%.
     
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I wouldnt think he is bipolar either. Not with the brain injury. Actually after my Traumatic Brain Injury (TBI), my bipolar symptoms got somewhat better. I had more delusional thinking during it and right after it. However by a few months later the delusions had settled down and my bipolar was more settled. I havent had near the cycling I had before the meningitis. I had a really severe case of meningitis and was given a 10% chance of living. Was on the Traumatic Brain Injury (TBI) unit at the rehab unit for a month and a half because I lost the use of my arms and legs.

    Before the meningitis, I cycled at least weekly and that was with all my medications on board. I just learned how to handle myself. Sometimes I cycled more often than that. Before I was medicated I was cycling daily or what they call mixed states. Now I can go into mixed states if something is really, really wrong but its rare.
     
  14. buddy

    buddy New Member

    so cool that it settled down after that. But not a treatment of choice! You deserved a break though given all you went through. My sister has bipolar but very mild. usually just prolonged depression. medications help her wonderfully so she is pretty stable. We know when something is wrong because she usually spends like crazy. Stupid impulse buys (everyone does once in a while) but she will suddently max out credit cards etc. Has never interfered with work or anything like that. She takes Depakote.
    I think your going through that really gives us a source to ask about different things from an insider perspective. I am glad you share so openly.

    Thanks Janet, again, I am so glad you are ok after those close calls!
     
  15. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Ive always been very open and in fact, I got my diagnosis while I was here on this forum. Many of the members who have been here the longest were here with me while I went through it and helped me through some very tough times. They were my lifelines many times when things looked very dark. I can never thank them enough. I dont have much in the way of family, I am an only child and most of my extended family doesnt even think about me as far as I know. They sure dont keep in touch. For me this board has become my family.

    When I was so sick, this was the first place my kids knew to come and tell, then they called my father. This place is what saved my life I am convinced. I have saved on my hard drive all the posts full of prayers and good wishes that everyone posted for me. I also got cards and balloons. I still have them. When the doctor's told my family I was probably going to die or be a vegetable, everyone here prayed or rattled beads and look at me now! My first words upon waking up were "the board" ...lol. Not my family...but here. That kinda ticked them off but oh well. I remembered them pretty quick after that. Its funny how I remember saying the board. I dont remember a whole lot about that time but I do remember that. I missed everyone so badly but hearing from people helped me a whole lot. A few people called Tony to keep up with me on the phone. Thats how special this place is.

    I never would have dreamed back in 1999 when I came here looking for help with my 12 year old that I would still be here when he was 25! LOL
     
  16. buddy

    buddy New Member

    Janet, I am bawling. I think why I feel this way is because many of you are so close yet you make those of us who are new feel just as welcome , supported and even valued for our input as you do eachother. It is very strange how a forum that is really kind of impersonal in that there are no faces or voices, is so intimate and real. You are right...a very special place and my lifeline lately for sure.

    OK so now ....I called hospital. case manager and asked to have doctor call me. He is so nice. Called me right away and first started talking about things I hadn't thought of just so open and friendly. Doesn't get shocked and again says he is in the right place but that he is unique for them so they just monitor and change things for him when needed, but still push him to do the best he can and not get stuck in his behaviors. That was reassuring.

    I asked about the medications so far, he is pleased that there are no bad signs and thinks that is enouraging. He said the lamictal will take forever to fully beout o fhis system, not what I was told at first, and so we may be fighting that for a while.

    I asked about the difference between tics and the compulsive/perseverative (And he said Tourette's like) stuff. He said it is really hard to tell the difference and that in the end it is really down to either way, he does not have the impulse control when his brain is distracted by anything else. I told him about the school issue with his saying those things so loud and in public and admin getting all wigged out. He said, it would be interesting to do a test where they take him off the concerta for a short time and see in a very systematic way how many of the behaviors worsen and if the tics get any better. He said because he is on such a high dose of clonidine it probably cancels out tics that would be caused severely by the high concerta he is on. He said the first day when he got medications late was good example that he NEEDS the medications because all hell broke loose. But now that they know him they can compare him on medications versus off to show them how biological it all is. Interesting idea, and I dont have to contain him, so I said go for it. He said we can do all kinds of behavior counts and take advantage of his being here so I can amunition to get appropriate services for him. I am thinking I like this guy.
     
  17. InsaneCdn

    InsaneCdn Well-Known Member

  18. buddy

    buddy New Member

    HAHA IC! wow good? or wow bad? thoughts? should I do more??? SO open to suggestions...
     
  19. Liahona

    Liahona Guest

    I'm thinking wow you find great people to work with. I really hope this works with the admin problem. It might put his behaviors in perspective to the admin.

    You are so good at his medication management I don't have the experience to suggest anything.
     
  20. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I like your docs! Definitely document everything very well. Dates, times, medications, tics, everything.
     
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